Survival kit: For men at risk in the age of AIDS

From New York to California and in all the states between gay and bisexual men as well as intravenous drug users are now living in the age of eight. From the time the first cases were reported in June of 1981 through the end of 1986 more than 25000 cases of AIDS will have been diagnosed and reported in the United States acquired immune deficiency syndrome. A is not a simple disease but rather a complex breakdown of the body's immune system which makes a person susceptible to a variety of serious and often life threatening infections. We've learned that AIDS is caused by a virus which can be spread from person to person and through the transmission of body fluids during sexual contact. And by the sharing of needles and syringes in this country the virus is known as HTL v3. V3 infection continues to spread at alarming rates in the groups at high risk primarily gay and bisexual men and intravenous drug users. By the end of 1986 approximately two and a half million Americans will have become infected

with HIV all the three. Experiences with the infection vary from person to person. Not everyone who is infected will develop symptoms nor will everyone with symptoms develop AIDS. Experience to date suggests that a third of those infected may go on to get symptoms and one out of every 10 may develop a. People have called AIDS the tip of an iceberg referring to the vast number of hidden or unpublicized HTL v3 infections with that iceberg growing larger every day. It's appropriate for gay and bisexual active men and intravenous drug users to wonder as many of you no doubt are wondering now am I or will I someday be infected. Any time you got the flu or cold or something and hear these cries for 9. Months. I think it's going to spread a lot of paranoia. Every little symptom that would come out of that. Lee and Doug say that searching with the colds or the flu every time you get a runny nose would not be a symptom but what it's turned into. Keep myself healthy down

every little pimple. Don't you think my sis going to turn blue. Again. If you're rundown and you're tired when you're fatigued Is that something that is not just a symptom but something that's going to possibly you know take care of yourself turn into a virus that can give you. The fears these men express are shared by many gay and bisexual men. They're worried about AIDS but no one develops AIDS without first being infected with HTL B3. So let's look at the symptoms of the more widespread problem. The viral infection itself. A lot of people have no symptoms whatsoever. The public probably oblivious to the fact that they have this silent infection. The most common symptom that we've seen is that the patient complains of being fatigued. They may have low grade fever or find that they sweat quite a bit at night or they may have lost 5 or 10 pounds over the past several months. But the most common symptom people are where they have infection is simply considerably more fatigue it may limit their

physical activities to some degree. Most people who have infection are able to work and pretty much maintain most of their life activities however there's no question some individual seem to spontaneously get better they will feel ill for a number of months. I have these diverse symptoms and gradually it will spontaneously resolve and they'll come back to the state they were before it if there's only one fact that they feel well and have no evidence of an ongoing infection. So many individuals will clear the illness spontaneously but the symptoms Dr. Mackey described can be attributed to any number of other infections and diseases. How can you decide if it's really HTL B3 infection. Well I think they're probably the best we have finding that you're infected and the only really reliable way to identify infections short of a diagnosis of AIDS in other words a person develops pneumocystis pneumonia or develops a campus the circ home or is by

having the blood test. And finding that the blood test is clearly positive with a confirmatory positive Western Blot test. Most individuals it would appear once are exposed to the virus they will develop a positive out-of-body test within somewhere between 6 and 12 weeks. What does antibody testing tell us. If a person comes in the first thing that we do correct is that this is not an AIDS test. We're very sensitive about that issue because that gives a false impression impression about what this test is able to to do. OK. We immediately state that this test is for testing for the presence of the anti-money which would indicate that a person has been exposed to the HPV virus. Well you going pretty you going to decide whether or not you're going to have the test if you're given a form. And there's so many things that it says this test will not tell you this is not a test grades this is not a job for this and you go what is the point that I'm in New Jersey and again you're innocent

almost walked away depressed thinking like you have to tell you know but it's. Because that is what they're trying to tell you that although it's not the absolutely certain there's a good reason to believe that you're either going to be negative or positive in Wisconsin the test can be given either by your own doctor or an alternate test site. The Division of Health created these testing sites to protect the blood supply and to encourage testing of people at risk by providing for anonymity and sensitive pre and post test counseling. Why this is important is because you know allows people who are concerned about whether or not they may have the infection to go in and be tested in this way. And we believe that there are some people who might be frightened of going to the doctors because they may be afraid that their name will end up on some sort of list and it could result in them losing their job or losing their apartment and something like that. So these people can go to these sites. They can be tested. These are totally anonymous let me find out whether or not they have any infections to find out whether or not they should be taking any

precautions. And if so what kind. I thought that I was positive that's the way I looked at it myself. My roommate on the other hand he he looked at it as he wanted to know. He didn't really know one way or the other whether it was positive or negative. So. He wanted to have the test in but he didn't want to have it done by himself he wanted somebody else to go along with him in Iowa. I told him I'd be more than willing to go with him and having done it there was a lot of fear in his. His mind about the Old Testament. See just at the ultimate test of science the testing process involves two visits a pretest was a post test visit to get the results at the pretest visit somebody comes in they get the information consent form to read over it. They have a chance to discuss any questions that they have about the test itself about the testing process or about the specifics of coming back to get the results. And having those questions answered we talked about risk reduction strategies concretely how can they reduce the chance for

transmission for not giving it to somebody else if they have either are not getting it if they don't have this infection you know when all their questions are answered they're satisfied that they want to go through with the test we've got a small stream of blood that blood is labeled with a number and letter code that's actually made up by the person being tested so there's no way that that can be identified or in any way trace back. I want to pass by my fellow myself my own sense of. Balance and that was something that I wanted to know. Then you have to conduct myself in the future. You know it was like. He forced you to reinforce me for where I was that you know our position is that you don't need to have the test. In order to implement the behavioral changes needed to survive in this AIDS crisis. Everyone who is homosexually active. Everyone who is. A member of one of the high

risk groups needs to practice what we call the safer sex guidelines. And whether you're in a body positive or in a body negative if you. Practice those guidelines then you will be protected. But if you're like everyone else including myself. You only take those precautions. When you're motivated to do it. That's important. And the antibody test results are a very good motivator to that end. And there's another consideration I think that the health care provider. I think my physician dentist an individual may be. Exposed to the blood the patient ought to have that information that the person is pasta. There are very specific precautions that can be taken to greatly reduce the risk of transmission from blood. But not everyone agrees. Any health provider should be conscious of certain.

Precautions against exposure to body secretions. All dentists. Should be practicing some sort of precautions when they come in contact with any patient's body fluids. I discussed it with the physician that was treating me for I have not been to a dentist that I've had to tell them about it but I know that they are becoming more informed in everything else about it so I would have no problem saying you know you're going to hell. Take additional caution because I am half testing positive preached the only three. I and I don't anticipate any any negative reaction from that those opposed to the antibody test often cite the potentially harmful psychological impact but counsellors at the alternate test sites work hard to minimize those types of reactions. The most horrendous thing that can happen. In my view is that somebody can get a positive test. I think I've got AIDS. I'm going to die and that happens

when the problems that I see with it is that if someone is tested negative and I've seen this with and with people in the bar community is all of a sudden they have they have a free reign. It's like I'm OK now I don't have to keep you know really watching taking care of myself I'm not going to get AIDS and I get a real misconception that can be real damage and vocal critics of antibody testing point to mistaken results. Many of you have heard of false positive or false negative results which can be particularly damaging to the person who receives them. Advocates of the test agree that it's not infallible but stress that for high risk individuals has repeated testing and confirmation of findings with a second level test can produce 99 percent reliable results. But supporters and critics alike agree that test results must be confidential. Some believe that anonymous testing satisfies this concern. Others fear that anonymity cannot be guaranteed. And fear of repercussions should test results

become known to employers landlords or insurance companies. That unanimity I think is really important. Yeah. I would not take that test us unless I was assured that it isn't. And I feel pretty comfortable that I can do that at least in medicine. There is concern over whether or not you can actually have the test confidentially. That was a problem I think is one of the major reasons why individuals are not taking the antibody test. They're fearful and justly so. That they would not. Remain. Confidential. However there are alternate side programs all 30 of them throughout the state have been designed to assure that you have that confidentiality. So the decision to be tested is not an easy one. There have been people that have asked us for our advice and we do not advise one way or the other. We believe that it should be an informed decision. Given all the implications around the cations of this

test and what it means what it does not mean. And then it's an informed choice rather than us having advised them whether they should not or should have the test should you decide to have the HDL v3 antibody test it would be wrong to think that the hard questions are now behind you. Waiting for and coping with the positive or negative test result can be difficult. But it can also be a period of growth in which you become more conscious about your attitudes needs and goals and more able to control your future before they give you results. They sat and they asked me you know if your test is positive. How would you react. If your test was negative How would you react. So I thought I was secure with myself because they were real. Didn't you know this. They wanted to know for sure. It's like if you tell us that positive. You know you're not going around kill yourself. You know that

you aren't able to deal with this and not if it comes back negative you actually go out and run rampant on the streets. A little sex money or something. It's encouraging to know that most people will test negative but among those who do receive a positive test result. Counselors see a variety of reactions to the news. Some people right away ignore everything else he has said and think oh my gosh I have or I'm going to get a very wide range of reactions to positives. Everything from well now I know that my risk of contracting this very scary disease is higher. And I'd better start eating well and getting exercise. And I think I better not push myself so hard at work. I have a pretty stressful job. I think I'd better be kinder to myself and then go on about life too serious depression.

I think anybody getting a positive with that you know with the way that AIDS has been betrayed and the kind of mindset that you go through. And you go through many crisis. I let myself wander into an imaginary situation where I thought this is it. But I was able to bring it back to the surface and say. This is not yet this is you know just an indication of where I'm situated right now and that I can. Prison protect myself from further exposures and that I intend to live out my life and that you know I'm not necessarily going to contract AIDS. Counsellors at the alternate test sites help prepare people for the emotional reaction. They also suggest some specific health care strategies. We first try to explain to the individual that they should protect themselves from further infection because they have a depressed immune system they're more susceptible to acquiring a number of different viruses. That is important and we discuss how that occurs to me as much

as we like to recommend to individuals that they consider seeing a physician. The next thing we look to recommend to the individuals are the specific health guidelines the things to do. Avoid alcohol excessive alcohol get regular sleep balance your diet. Avoid stress and stress is quite is quite a debilitating. Situation for individuals with a depressed immune system it opens the opportunity for them to be more susceptible to other viruses. We further recommend to individuals that test positive not to donate blood plasma semen. Under any sorts of circumstances. And what about relationships past present and future. If you test positive should you tell other people. And if so who. I think a person who has a positive test ought to be willing to die brands that enter information to a potential sex sex partner that the partner

has the option of making the decision what they want to participate in a sexual relationship. And there's absolutely no question that precautions are going to be taken to try to prevent transmission of the balance. I've always told. Anyone that I plan on sleeping with that I'm having and I'm going to have sexual relationships with that I have tested positive for the HDL B3 virus is yet to prove. It no right no rejection no one said Oh I can't have anything to do with you. And in the recent pre agreement that safe sex safe sex practices will be utilized if you come to that point we suggest that it would be important to contact your most recent sexual contacts. And where appropriate and essential. Explain to them that you have tested positive and encourage them to come to the program and be tested themselves. And perhaps in the meantime to avoid further chance of passing the virus to others until they know more about their Anybody

status. As to whether or not they should tell their family or friends. Individuals that are kind of body positive or that go on to develop AIDS or are. Are going to need someone that they can talk to and share their experiences with and your problem is in their day to day needs. And the psychological needs associated with the debilitation of this virus. So yes we recommend that they do contact friends and family. Only those that they can trust and have an association with that will support them in their needs across these next several years. That's important. Sometimes people tell their friends that's risky to do. If you go to an anonymous testing site. And go through all kinds of rigamarole to get this result in a way so that nobody knows. And then you tell everybody out of the sun. That's dangerous in terms of repercussions.

And what about the majority of people who test negative. How do they react to the news and what lessons should they have. Well I think the main reaction for somebody who's negative is a sense of relief and a new beginning. They have by and large heard just as much as the people who are positive about safe sex and they have been trying to practice safe sex. But. I think everybody called sometime in the past when the. Friends would mean the words he said. And as an incentive to. Continue or get him to leave the safety of cycling home. Oh my God now it's good to a certain point in time given the limits of the reliability of the times you were OK as a as a load off the mind of the first reaction is usually. Just relief. And then of course if they're talking to me and I've also heard him tell it and

say the same thing that I say boy that's wonderful and of course it might be wrong. And I try to get people to listen to that. This might be wrong. And how will you act. What would you do if it were positive. And if anything that you would do differently with a positive test affect somebody else you better do it whether you're positive or negative. I've been tested three times. And every time I. Make it. Even though I'm not from missed us. If. You find. Some even considering going home with someone. I will tell them. I can tell. Did. I come up negative. You know and I I made blatantly asked him Have you been tested. And if so how did you turn up. And. They say no they haven't been tested. You know sometimes they may have second thoughts. Or. You know if I'm not sure if I have.

Condoms at home. I will make a stop to pick up more. But. You know I'm negative now and I don't want to take a chance of becoming a prostitute. We try to counsel individuals that. Test negative. After we've offered them their test results. To bring to them the knowledge that this does not indicate that you are mewing nor that you may not have been exposed. Nor that you may not necessarily go on to develop. The virus. It's a misconception that some people think they are immune because it tested negative. It's a misconception to think that. They have not been exposed because it wouldn't necessarily show up on the test. It takes between two weeks and six weeks for an individual to incubate an adequate quantity of antibodies. To. Show up on the test. So it's necessary to bring the client to some understanding to look back at their sexual contacts across the last several weeks as to

whether or not those contacts may have. Not had adequate time to incubate. We like to indicate to our clients. That. The virus. Passing through our community has not peaked. If the virus runs its course little as it has in other states and other cities. It has not peaked in Wisconsin. And what we see now is in fact only the tip of the iceberg. HTL B3 infection is spreading through our communities and our state. As yet there is no vaccine but two simple tactics are known which can greatly reduce the risk of new infections. First if you're an intravenous drug user don't share your needles or other apparatus with anyone. Second if you're a man having sex with other men don't have anal sex without using a condom. Since the virus can be found in blood and semen safer sex practices involve

preventing these fluids from entering the body through any openings. One thing that is in some ways fortunate is that the same precautions will protect me from getting sick as would protect me infecting people. So if I value my life I will do the same things as I would altruistically do in order to help other people's lives be saved if I'm going to have sex with somebody that isn't going to be a real player right in the beginning of it. It's going to see today but that isn't very romantic. I disagree with the fact that. Something. Like. What I. Define romance. As is utterly horrid things like. What is out of the gay life right now is different. And it should be. As it is out of the heterosexual community. It should be. A concern of both before they have. Intercourse or anything.

To find there. That they should take precautions. Everyone agrees that safer sex must be practiced to prevent the spread of the disease but not everyone agrees about the merits of antibody testing in this program we've tried to present some of the arguments both for and against the testing but that discussion is far from complete. Everyone must weigh the arguments seek out more information and then make an informed decision. I don't think there's anybody who is in a risk group or who has a. Friend or partner who's in a risk group who can't even afford to ignore the issue of antibody testing today. People need to make a decision. If you are overwhelmingly appalled at the possibility of repression and misuse of the test information and there is no anonymous testing today maybe you'll decide you don't want to do it. If you think that there are benefits in knowing your own status or knowing a partner status you should decide to do the test. If you don't know enough about the test to make up your mind you should get more information. But I don't

think people should be in the position of saying I can't deal with this now. I'll think about it later because. There may not be a later. Everyone of us at risk in this age of AIDS helps to decide the future course of the epidemic. If we act the part of victims who are in danger of becoming victims we need to realize that HTL v3 infection is a survivable condition. A person who has AIDS to yell B3 infection certainly can survive just because they have a source I suggested that the majority of those with AIDS TLT through disease are going to be survivors. And sadly for society there is no question. We will survive this November. Besides Flores the strategies of the individual people can adopt when it was modern medical privacy. We will beat this disease at some time or other. The ones who have survived.

Their survival to some extent due to recent abuse survivors all of us as individuals as couples as groups of friends and as communities must face the challenge of the HTL v3 epidemic and develop our strategies for survival. Individually we must learn about the virus and make decisions which will improve not only our own but those for others. To learn more about HTL v3 infection or about AIDS. Call your local AIDS project your support network or one of the following numbers. The Wisconsin AIDS hotline 1 800 330 for AIDS in Milwaukee 273 AIDS the National AIDS hotline 1 800 342 AIDS the National Gay Lesbian taskforce Crisis Line 1 800 2 2 1 7 0 4 4.